26/11/2009
Day Plus 595

Hi Everyone,

It has been a while. Umm where to start, heaps has been happening but the days go so quickly sorry for not updating in awhile.
Zac had another operation yestarday they removed his Port and feeding tube and checked his ears out. The operation went ok but he had the start of two Cardic Arrests one in the operation and the other in recovery he is ok. The operation went well other than that. We are off to Sydney again soon next year to see some more doctors Zac hearing is no better and they are not sure if messages are sending and receving to his brian and ear and that is why he is not speaking or if he needs a cocheal. The left does not hear at all and it is nerve damage but the right shows it works so he should speak so they are starting to think it may not work very well at all. We are learning sign with him which he is not doing very well but it takes time. Zac keeps getting sick he has had lungs infections cold and colds and more lung infections and the doctors are not sure why so more tests to come to see what his immune system is doing fingers and toes cross it comes back nothing or nothing bad... Zac may have another operation in 4 weeks if this one did not work well as they removed the feeding tube and hope the hole will close if not he the doctor said Zac will have to have a bigger operation to close the hole which is major tummy operation so fingers cross his hole closes well I do not need anymore operations this year and NO MORE ARRESTS how much can the heart take...
James is still having problems he has two lung infection and ear infection and throat infection and he has had a few down months we are trying hard to get on top of his aspergers but it is hard sometimes to parent him as in when he is playing up is he being normal or not..
Other than that all is sort of NORMAL well for this family anyway.
I hope everyone is doing well I will back in touch soon.
Till Than Everyone be Safe SMILE and Laugh ....
See Ya
Susan

Tuesday 18th August 2009
Plus Day 494

Hello Everyone,
Just a quick note, Zac will be having his GFR on Monday so we find out how well his kidneys are working Fingers Cross.. Still Tube feed but trying to get him off it so fingers cross again.. Zac has a appointment in Sept with the hearing doctor so we will find out what they are going too do I begged NO cochlear just an aid pleaseeeee...
James results are back on his IQ and development test well it is Asperger's ( which is a form of autism ) who would have thought oh well just throw another one at me.. James is ok he can talk and live a normal live just needs help that is all. Back at John Hunter next week for appointments so don't want too, when does it all just stop and life get NORMAL. Just Over it all..
Very Important DAVID McNALLY has now reached 3 years post transplant, Party for David I think ... We are all thinking of you David and we hope that your GVHD clears up soon and you can be pain free and free from all the drugs.

I will let you know the results of Zac's GFR as soon as I get them.. Thanks to everyone who has been sending me emails very lovely of you...
Till Next Time "Smile" ...
Susan

Monday 13th July 2009
Day Plus 458

Hello Everyone.. I have had a packed month I had a baby shower for my sister inlaw at my house and my other sister inlaw also had a baby shower two sisters pregnant together and both having boys and they are three days apart, I can only wish them the best on a safe and healthly babys boys... I also started a part time job just on saturday mornings, don't know how it will go or if it will last but it gets me out of the house and earns a extra bit of pocket money. Which is always welcome in my house. I have had the flu for three weeks and was tested for whooping cough it came back that I did not but I can't help think that I may have as they still placed me on the drugs clarithromycin which treats whooping cough and with in three days a was better and my cough was almost gone. We all have been sick with a bug aswell. I was so sick and both James and Zac had it too that Troy had to come home from work only to see he started to get sick 2 hours later.
We got an letter from the school the other day we thought James was in trouble but he was been awarded for doing so well in school and he is only just started this year Wow. I'm so proud of him my little shinning star.
Zac has been ok still tube feed but he can't seem to knock this cold he has had it for about 2 months on and off with a cough too. Zac is walking now and walking everywhere it is so good to see but he is still not talking any more words only Mum Dad Nan and Bub but Troy believes he said Ball on the weekend but I have no heard it and Troy can't him to say it again oh well it will come. Any idea on teaching Zac to talk would be helpful my friends anything, but I think he will not talk much till they help with his hearing I wish my doctor would pull his finger out and hurry up with an appointment.
I will keep you updated on hiis hearing and feeding again soon till them
BYE and be safe...
Susan

Saturday 30th May 2009
Day Plus 414...

Been awhile everyone...
Time fly's.. It has been a hard month and no Zac is ok I think it has just sunk in I'm home and everything I went through. I have been visiting friends and catching up but I find that hard too there kids are well there kids are doing everthing they should be doing, but don't get me wrong I'm very proud of my boys but I wish sometimes I could just be NORMAL.. and have the normal life. Sometimes I just sit and stare and think what did I do that was so wrong to put my kids through this. Maybe I did nothing or maybe I did but I have to deal with cards I was dealt with. So Zac had his tests done on his development you know on everything and he came back between a 6 to 10 month old . Not bad for a child who spent so much time hospital. Zac is walking holding onto things he wont let go he has been doing it for about 4 weeks now but he shows no sigh in letting go yet..
A very big congrats to Kristy on her baby boy Jai he is so cute..
James loves school hmm wonder when that part will change not looking foward to the teenage years lucky I still have abit to go LOL..
Zac is still tube feeding we took him off it for a couple of weeks but he lost 2 kilos so he is back on tube feeds again gee wish I could lose 2 kilos over 2 weeks now I will take that diet LOL...
Till next time I hope everyone is well and Happy...
Susan

Day Plus 326
03.03.2009

Hi Everyone,
I know I'm a slacker... I have been so busy and would not believe how time fly's. Well first I want to thank Aimee so much for anyone who does not know Aimee she has a beautiful son David who also had Wiskott Aldrich and Aimee you are always there for me, when I need you, so thank you from the bottom of my heart.
First James started school this year my boy is all grown up...(sad) but happy too he he he...
Zac hearing test came back looks like he is deaf in his left ear but right is ok with a tiny loss. Zac is due for his MRI this month 31st and while he is having this they will look at his ears too.
Zac bloods have been all over the place with him dropping his sugar levels who knows why any thoughts on why let me know please.
Zac is crawling now and his talking is no better still mum and dad but who can complain, best part is that he said mum first... he he he...
not much to say I'm waiting on a whole heap of test to still come so fingers cross.
ps everyone my blog has a no copy right so please don't use my photo's or info for any papers or mags or anything else not being rude only that we have had a mag company use this blog and copy my blog which has now printed it all over Australia and New Zealand and there is incorrect info and photos that should not have been used which has coursed a lot of problems here.Please I'm not trying to sound rude, so noone take it the wrong way..

Cheers Everyone I will post again this month once I know more
Susan

Day Plus 272
8/01/2009

Happy New Year Everyone!!! I hope everyone had a lovely christmas and a safe new year... Here's to a healthy Safe New Year!!! Well I have been home now for 6 weeks and loving it, it was so nice to be home for christmas Zac had a great day and James was so tried by lunch he fell alseep for a while... James birthday is comming up and i feel for him as i can't have party for him because of Zac hopefuly soon Zac will be out and about with everyone. James also starts SCHOOL this year oh so sad my baby is growing up but so happy too. My doctor is away on holidays at the moment and I wish he was back, Zac bloods have been up and down he keeps dropping his platelets and his urea has been climbing up. Zac blood pressure is still high and to top off that they found a lump a growth in Zac ear and they have no idea what it is, I'm just staying cool and hoping it is nothing FINGERS CROSS. I can't say on Zac about starting steriods or not as one my doctor is away and two the poo has changed into a green paste. Lovely !!! Zac is having MRI in March to check for damage as his last MRI showed fluid around the brain and shrinkage of the brain. That's it for me now have a good one everyone till next time Have a safe one BYE....




James Last Day at Preschool


Zac

Smiling Zac Zac

Me with Bronte

Margaret Troys Mum (NANA) and James

James and Me Hi Five Zac

Do not copy any info or photo's not to be used by anyone no copying anything from my blog